Anyone with Lichen Sclerosus out there?

need to try epaderm, my dad got some for a rash on his arm so need to try acquire it from him lol,  i sometimes use vagasil cream afterr i pee but this week been no to bad after i go i just dry and then clean with water (freezing cold, blisssssss  lol)

kinda coming to terms with it now, just a pain in the bum pardon the pun its my life now so just need to dust myself down and get on with life, next up us gonna be the camera up the jaxie as docs dunno if bleeding down there coming from the old granny skin i have or the hole the broon stuff comes from lol aand that i'm no looking forward to well the prep before hand anyway as its bad enough having to use the loo due to state of my skin doon there never mind running every 5 mins for a number 2.

anyhoo im off to beddy byes, hope everyone on the forum is doing okay, take care and best wishes.

lizzy

Hi 

I had been diagnosed with LS 3 years ago at age 29. My Gyn wanted me to use topical cortisone. I went for a second opinion to the university clinic. They send me for biopsy and treatment back to my gyn. they said thex could not do more than my gyn. I went to see a clinic where they work with "functional medicine", they fous on causes, not just symptoms. Luckily a friend of mine knew this clinic was very effective in helping cancer patients to recover. They checked for nutritent deficiencies, allergies, matabolism problems, thyroid... just anything that could impede my body from functioning properly and heal.From there they set me on a allergy free diet and specific vitamine therapy (orthomolecular treatment). 

From that point on I changed many many habits: No gluten, just organic unprocessed foods. just rawmilk goat dairy, Many green smoothies, superfoods like curcuma, chlorella, moringa, msm, colostrum. I started just usung natural personal care products, and the detox list goes on. I just lived very very naturally and nourished my body to provide it with everything it needs to heal. I first started to feel my body getting rid of toxins, I felt weird and bad. But slowly started improving & also my LS disappeared gradually. I refused cortison therapy (i did not put that stuff even once there, it felt wrong!). After 4-5 months I had no more LS symptoms, I felt better than EVER with all kinds of health issues I struggled before. digestive health is also a huge impact factor on health. take care of your immune system, it is crucial in healing.

I recommand everyone with health problems to check their lifestyle and get help from a holistic doctor, that works in the area of functional medicine. Wish you get better. hope i could help. much love

Hi,

I have a bit of a success story about managing my LS... I was diagnosed about 3 years ago at the age of 31. I was told by my gyno that I would have to use steroid cream for the rest of my life, and started using it... for about 3-4 months. It helped initially but then the skin on my vulva started feeling sensitive in a different way, and I felt it was a consequence of the cream, not the LS. I panicked and went to see a nutritionist who uses muscle response testing. She set me up on a supplement regiment and asked me to avoid some foods. For me, it was cane sugar and cheese. Dairy was ok, just not cheese. I had regular visits to adjust my supplement schedule, and was able to successfully get off the steroids after about a month on the program. My symptoms lessened and lessened, and now, three years later, I can honestly say I'm ok. I have a tiny amount of symptoms here and there which show up as skin sensitivity, but I don't get itching, no real pain, just occasional tenderness, and even that is becoming less and less frequent. I've added sugar and cheese back into my diet but am more moderate about it now. 

One topical thing that was ridiculously helpful was wheat germ oil - but specifically from Standard Process, who actually separates the gluten part of the wheat germ from the product. Whenever I feel symptomatic, I apply that topically and it helps instantly. 

Look... I don't know what works for every body, and I've been reluctant to tote my successes online because I know that people are skeptical about anything that's not FDA approved and western-medicine stamped, but I know that this is what helped me. 

My nutrition doc is in Oakland, CA. Her wellness center is called Sojourn Wellness. She does work with people over the phone and I would highly recommend working with her, and I"m sure that she might also be able to recommend someone closer to you to work with if that was what you needed. 

Hi, don't worry. I've had LS since I was 3 and am now 47. Saw various Drs over the years but I believe the best are at Guys. I have been attending the clinic there for c. 20yrs under the watchful eye of Dr Lewis who took over from Sally Neill. I have entrusted them for a long time and it was Dr Lewis who spotted my cancer. But I have had LS for a long time and because of her it was spotted on a 6mthly visit and therefore is early stages. They will ensure you are well cared for and have the appropriate meds. You are in good hands xx 

I was just officially diagnosed with LS today although I have already lost my inner labia with an ongoing attack on the viability of my clitoris (I can happily do without the inner labia but the clitorus? Come on!)

I found your comment interesting as I have also been previously been diagnosed with Lichen Planus by my dentist and I also have some increasing deep ridges in my finger nails, causing them to split. 

Perhaps I need to have the systemic aspect checked out further. Is persistent heartburn also a symptom?

HI Eclair,

I have just been referred to Dr Lewis at Guys. She seems nice.

My surgeon is Mr Nath at st Thomas.

Clare 

Dark Tunnel indeed....

If you have not watched/listened to / the online seminar of Dr. Andrew Goldstein, re LS, I highly recommend it to everyone.

I had a bad reaction to the ointment...  

I have something going on and am very afraid

I would be less afraid if I had a good doctor

If i lived near Wasington DC, where Dr Goldstein is, I would go to him or his team...

Has anyone been diagnosed with LS who has deep pain and changes in archetecture, texture, and color,  inside (not just outside, in the vulvular area) but inside the vagina, around and above the urethra area.?

?  

this seems to be a controversal thing with what I read...that is can not and does not occur on the inside... yet....here I am (I know, I need to get to a dr)

I had vin 3 in May 17 had a 3 hour op to eradicate it but itching never gone referred to dermatologist as gynae thought it was lichen 3 months now had every cream on the market so now  done biopsies think vin is back awaiting results so don't let fob you off must be awful if had it years good luck 

Hi PeaceNow - Yes, found out I have severe LS about 1 month ago.  My dr. said she had never seen it that bad and never had anyone have a bad reaction to the clo ointment.  Guess when I get something....I really get it.  All of my issue so far has been outside but not only in the vaginal area it spread all over my backside and up. 

I'm so sorry to hear this has affected inside, just can't imagine what you're going through.  I was so miserable in pain it hurt to walk and sit.  It took the heaviest oral dose of steroids to get my LS to calm down.  I'm still a little tender but scared of what this could turn into.  My dr. has turned me over to a dermatologist that specializes in this area but not able to get in to see her until March 13th. 

This is such a bizarre disease and comes out of nowhere.  I've noticed that my skin in the entire area has changed color and texture.  Vulva and clitoris area are white now and skin looks almost like crepe paper.  The backside and around the anus is reddish/blue almost looks like I've been punched and bruised, but the skin looks smooth and taunt like it could crack at any time.

I'm very anxious given all that is out on the web and what this could become that I look at the infected areas daily and my visit to the specialist can't come soon enough.

Hello Han B.  I was diagnosed with VIN (second time) with underlying LS a couple of weeks ago and am currently waiting for a dermatologist to get in contact with me to let me know what treatment I will get.  She wants me to use Aldara cream to clear the VIN and won't treat the LS with steroid creams as this could encourage the VIN to get worse. 

As it's a gynae/dermatology condition she has to consult with the gynae oncologist to decide on treatment.

I understand the frustration of not being able to speak to anyone about it.  Nobody wants to talk about itching or pain 'down below', so you basically suffer in silence.  I thought my itching was only coming from the VIN but now realise it could also be coming from the LS.

I have all sorts of creams to relieve pain and itching but not sure if any of them work. I have just ordered a pack of Tucks from Amazon and these might help with the itching.  They are little pads which are medicated with witch hazel and have some good reviews.  I've yet to try them but it might be worth a shot.